We explored what PCOS is, how if affects fertility and how it is treated. Now, we hear from real women as they share their experiences with PCOS.
Kathleen, 26
How did you discover you had PCOS?
Hormone testing that showed high testosterone levels. I asked my gynecologist to test me for a year, and she would not. I had to switch doctors in order to be tested.
Do you have any of the typical symptoms (weight gain, hair growth, irregular periods, acne)? Which ones?
Irregular and heavy periods, and acne.
How do you deal with PCOS (medicine, birth control, diet, etc.)?
Currently, I am treating it with birth control, but it’s not controlling the symptoms. I take spironolactone for the acne, but that gives me two periods per month. I am really just hanging on right now until I can figure it all out.
What is the biggest struggle you face in dealing with PCOS?
Never feeling in control of your own body
Sally, 27
How did you discover you had PCOS?
I always knew that I had some sort of hormone imbalance from when I first started my period. The whole reason I got started on birth control was because I would go months without having a period, and then I would have a horrible one — painful cramps, heavy, etc. I was only officially diagnosed last year when I talked to my doctor about my frustrations and symptoms.
Do you have any of the typical symptoms (weight gain, hair growth, irregular periods, acne)? Which ones?
Difficulty losing weight; hair growth in strange areas — neck, a few black hairs between my boobs; extremely irregular periods; painful, under-the-skin cystic acne on chin (looks like a tumor, feels like you were punched in the face); low libido; ring of cysts surrounding/squeezing ovaries; low energy/chronic fatigue
When/how were you diagnosed?
I was diagnosed just over a year ago after talking to my doctor about why I was first put on birth control, my low libido and what I could do about my neckbeard. She asked me if I’ve ever heard of PCOS or ever had it brought up by my previous gynecologist. Obviously, I had never heard of it.
She told me PCOS is not something that you can definitively diagnose, but typically, if you have two out of three common symptoms, it means you most likely have it. So she took me off the pill for a month to clear my system of those hormones that are delivered via the pill, then ran a hormone test and did a sonogram of my ovaries. My hormone test came back with high levels of certain types of testosterone and lower levels of estrogen, which cause the weight issues/acne/low libido/hair growth as well as issues with ovulating. The cysts surrounding my ovaries were another huge indicator — the cysts squeeze on the ovary and make it more difficult for an egg to drop into the fallopian tube, thus causing the irregular and painful periods.
How do you deal with PCOS (medicine, birth control, diet, etc.)?
I take Yaz — the pill is allegedly the most effective way to manage the ovulation/acne aspect to PCOS. Other than the cystic acne and period regularity, I didn’t see much of a change with my other symptoms. So about two months ago, I began a diet to help control the other aspects of PCOS (weight loss difficulties and low libido). I’ve cut out dairy, gluten, soy, sugars and take several supplements, which help with the insulin resistance that comes with PCOS. Chasteberry and licorice root help with the low libido, and inositol helps with the insulin resistance.
What is the biggest struggle you face in dealing with PCOS?
For now, the biggest struggle is merely things of inconvenience — hair growth, weight loss, libido. I have yet to find something that curbs the irregular hair growth other than waxing. However, my doctor has told me that the real struggles will be when I try to conceive. She said that I will have a much harder time than most people because many who have PCOS don’t ovulate properly. Thus, when the time comes, it is likely I will have to have hormone treatments to help force my body to ovulate on a more regular cycle since I won’t have the pill to assist my body to do so.
Meg, 29
How did you discover you had PCOS?
I found out I had PCOS through my gynecologist. After graduating from college, there was a stretch of time where I only had my period once during an almost two-year timespan (despite being on birth control, which was supposed to help regulate it). I knew I couldn’t be pregnant, so this was odd and a cause for concern. I told my gynecologist, and she suspected PCOS. She did a blood test to confirm, and I was diagnosed after that, at the age of 24. It was confirmed through a blood test, which showed irregular hormone levels (they were way off).
Do you have any of the typical symptoms (weight gain, hair growth, irregular periods, acne)? Which ones?
Unfortunately, I do. I was a very thin and active child/teenager. I started gaining weight towards the end of college (despite being a regular runner), and it didn’t seem to matter how much I worked out, I got bigger. I worked out religiously, and nothing would take the weight off. I have embarrassing hair growth on my neck and chin, and I had horrible acne growing up. After being diagnosed with PCOS, I did research on it because I had never heard of it before. It is like all of the puzzle pieces came together. It started making sense why I gained weight, why I have hair sprouting in places it shouldn’t and why my acne was so stubborn (I also have very oily skin).
I know I sound dumb saying this, but before being diagnosed, I kind of wrote everything off. Gaining weight? Oh, my metabolism must be slowing down because I’m not 18 anymore. Acne? Well, that runs in my family, and it’s common for teenagers/young adults, I’m not alone. Irregular period? What girl has a regular period! But the hair growth on my neck and chin really got me. I just never thought of these symptoms as related, and they emerged at different points of my life. The culmination of it all was when I finally couldn’t take it anymore and had to talk to my doctor. If I was aware of PCOS, I think I would have caught on a lot earlier, but as I mentioned, I had never heard of it before. As I began reading about it, I discovered that doctors and scientists are still trying to figure it out as well. For example, when I was first diagnosed, it was considered a reproductive disorder, however, now it is considered an endocrine disorder with reproductive consequences.
Have you faced struggles with fertility?
I have not tried to get pregnant, nor do I want children at this stage in my life. However, my gynecologist did warn me when I was diagnosed that it would be incredibly difficult to get pregnant and my best bet would be IVF. However, I do sympathize with women trying to get pregnant and struggling with PCOS. I am originally from the East Coast, and I saw my gynecologist there. A lot of the PCOS research was taking place on the East Coast, and they discovered at Virginia Commonwealth University that Metformin can be used not just for diabetics, but also for PCOS patients. I was extremely lucky that my gyno was on top of PCOS research and knowledgeable.
However, right after the appointment in which I was diagnosed, I moved to Oklahoma City for my first teaching job. My gyno told me that doctors outside of the East Coast may not be prescribing Metformin yet because it just published in a journal at that time. I went to a gyno in Oklahoma City six months after moving there for a checkup. I wanted to make sure the Metformin was helping to regulate my hormones and try another form of birth control. When I arrived, the doctor knew very little about PCOS. She wanted to take me off Metformin, but I explained to her that was the only thing allowing me to have a period. She said all I needed was birth control (not true, since I only had my period once in two years while on birth control a while back).
As I was asking questions about this fresh diagnosis, she finally stopped me and said: “PCOS is only an issue if you are trying to get pregnant.” I was horrified. 1) Even though I was not (and am still not) in the place in my life where I wanted to have kids, I still had a strange reaction to the news that it would be hard to do. I kind of felt like my body let me down. 2) PCOS has so many other implications and symptoms, so to ignore those was offensive to me. 3) What if I was trying to get pregnant? My heart broke for any woman who was trying to fulfill a lifelong dream of having children and going to a doctor who threw around infertility with such ambivalence. That’s crushing to a woman who wants to start a family, and this doctor was so cold and removed. I never went back.
How do you deal with PCOS (medicine, birth control, diet, etc)?
I take Metformin and am on the NuvaRing (birth control). I need to do more research on an appropriate diet for PCOS, and that is something I’d love to learn more about.
What is the biggest struggle you face in dealing with PCOS?
It is hard to name just one. Even though I can’t help it, it’s embarrassing to me that I have it. It’s not something I like to share with people, so I generally don’t. It has so many unpleasant symptoms, like the acne and hair growth. One of my biggest insecurities is the spider veins I have on my legs. I saw numerous doctors and spent so much money on treatments, just to find out after years of trying to get rid of them that they will keep coming back because of my PCOS/hormone imbalance. My legs are unsightly, and I always felt that I had the legs of an elderly woman, even in my 20s. I saw the first hint of spider veins at 18, but it got a lot worse after college and now my thighs look like road maps.
I feel like I go into relationships with baggage. I struggle with the anxiety that maybe a man doesn’t want to date a girl with hair growth and spider veins and who struggles to maintain a healthy weight. I worry that not being able to have my own kids would be a deal breaker (I doubt I’d ever do IVF and think I’d rather adopt instead). I guess what it all boils down to is that I’m afraid of being judged. These are all extremely vain issues, and I worry mostly about my appearance, but it’s true. It has taken a toll on my self-esteem, and it is difficult and expensive to try to treat many of the symptoms. Also, some of them are impossible to get rid of, so I struggle with accepting my body the way it is. At times, I don’t feel fully feminine (it’s hard to when you are plucking your chin hair before you go to bed), and I don’t ever feel beautiful.
Ashley Lauren, 24
How did you discover you had PCOS?
I was diagnosed with PCOS at age 14, after starting my menstrual cycle at 11 years old. From day one, I had cycles that lasted sometimes three weeks long. My acne was relentless, and I began gaining weight solely in my midsection. My body didn’t feel like my own for years.
My symptoms were pretty typical. However, I was so young when first diagnosed that it was easy for doctors to overlook my PCOS symptoms as just puberty. I was sent to a dermatologist for the acne and was told the weight gain was just a part of maturing. My symptoms were always looked at separately. My mother has PCOS as well, and she was the one who thought I might have it, too. Shout out to a mother’s intuition!
Growing up, I always knew I wanted to be a mother. For me when I first was diagnosed, since I wasn’t the typical woman with PCOS, the talk about fertility didn’t even come up. It was as I got older and became curious about learning more that I realized this is an issue I might face. I’ve decided to not worry about it until that time comes. Google can be a scary place, but only if you let it!
How do you deal with PCOS (medicine, birth control, diet, etc.)?
From the get-go, I had doctors tell me the only way to ease my symptoms was with birth control and to avoid any and all “bad foods.” It wasn’t until six or so years after my diagnosis that I found a plan that worked for me. I now combat symptoms with hormone-friendly diet and lifestyle. I didn’t share my struggle with PCOS for a while, and now I have a blog dedicated to sharing my journey. Talking about it has been so helpful and opened me up to a new community of women. I’ve learned PCOS is different for every woman, and what works for one might not work for me. And that’s okay!
What is the biggest struggle you face in dealing with PCOS?
My biggest struggle with PCOS has been the taboo side effects. Growing up, I always had this hidden anxiety, depression and body image issues that I didn’t know how to address. After doing some research and getting with the right doctors, I learned that anxiety and depression can be side effects of PCOS. I always felt ashamed of those feelings. I’m lucky enough to have a small tribe of women who are PCOS warriors as well, and they’re helpful during those moments!
Some advice: There were times I was really angry and upset with my body. So to anyone who has recently been diagnosed, I assure you that it gets better. Remember that this diagnosis doesn’t make you less. Nourish your body, and no matter how you feel, or what you look like, you’re beautiful! And eat that piece of cake because life goes on!
Thank you to these women who bravely shared their stories. To learn more about PCOS diagnosis, treatment options and more, consult with your physician.
